There has been much speculation recently as to the status of the National Fibromyalgia Association due to their recent staff layoffs and cutbacks on major programs and services. Many of us have been left frustrated with their silence as to the state of things. For me, I was most concerned that the FM community would lose its most visible non-profit voice. Despite its recent struggles, the NFA has been the leader in bringing focus, awareness, and understanding to fibromyalgia. We have all benefited, if even indirectly, from their efforts.
If there is one constant in life – it is change. And change is what the NFA is experiencing. The below President’s Message from Lynne Matallana goes into great detail as to what led up to the necessary changes, the current status, and future intentions for the NFA. I appreciate that they finally came forward with an explanation and wish them the best of luck in their time of transition.
Begin message from the NFA:
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Educating Encouraging Empowering |
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March 10, 2011
Dear NFA Friends and Supporters,
When the National Fibromyalgia Association (NFA) started 14 years ago, our purpose was to bring awareness and legitimacy to fibromyalgia (FM). Over the years, the needs of the community grew and so did our concern for people affected by FM and those in the medical and research communities dedicated to helping us. We wanted to share with the media what it was like to live with FM so that others would become concerned and could help us to make sure things were moving forward so that people with FM would have better support, more effective treatments and a better quality of life. The ultimate goal has been and continues to be that through research and education we would learn the cause and how to treat, prevent and/or cure it.
The organization was started and grew out of my attic into a full scale international nonprofit organization which achieved great recognition and credibility with patients, the medical community and government agencies. Over the years the needs of this large population of people which we represented continued to grow. We found ourselves in a position where we couldn’t say NO to anyone who proposed new programs addressing the needs of this community because we understood the many obstacles and unmet needs that faced people with FM every day. We wanted to help ensure that everyone with FM obtained a better quality of life and receive the medical care they deserved.
At the end of 2007 no one anticipated the looming national economic downturn. The NFA like all other nonprofit and for profit organizations was not prepared for our country’s financial crisis, reduced foundation funding, or the impact of new restrictions and tighter transparency regulations put on companies that helped to financially support our organization. Our funding was cut by 50% to 80% and our annual $2 million budget diminished by 60% in a matter of months. There were those in the FM community who were in a position to help us, and we greatly appreciated their donations and contributions. However, because so many in the FM community are struggling and not able to make donations there was no way to make up the difference. Then, in September 2010 right at the height of the NFA financial crisis, I was in a terrible accident that resulted in a major surgery, which required four months of bed rest followed by nine to twelve months of rigorous and painful physical therapy. Even today I continue to struggle to regain my health.
This set of circumstances forced the NFA, like many other companies and particularly nonprofit organizations, to undergo a period of transition and reorganization, including staff layoffs and cut backs on major programs and services. Like many other nonprofit organizations that were adapting to our country’s economic environment, the NFA also adapted and made changes necessary to continue to fulfill the key elements of our mission by focusing on retaining the programs which would help the largest number of the FM community members. In doing so some of the personalized and individual help we had been able to provide people in the past had to be cut back or eliminated. Unfortunately, this might have made it appear that we were not concentrating on and responding to the specific and individual needs of people with FM.
Over the past seven months we have realized that you have many questions and concerns about the NFA. Had it been our choice, we would have shared this information with you, the FM community. However, we were bound by legal constrictions and agreements of confidentiality to wait until we had developed a plan that would satisfy many of our financial problems. Foremost, we felt that it was important for us to make sure that people with FM would have the NFA and other organizations available to continue to serve the community. In order to make sure that would happen, we had to stay within the bounds of these legal constraints. We can assure you that no matter how bleak the situation our dedication to continue the work that we started so many years ago never wavered, and we have had to make some of the most difficult decisions we have ever had to make in order to assure our survival.
We are now pleased to share with you that we have reorganized and developed a new plan that allows us a platform upon which we can move forward. We are very excited that we have been able to accomplish this reorganization in such a short period of time. We believe our work will continue to benefit people with FM and allow the NFA to serve the FM community in a restructured format. In order to meet the needs of FM patients, the NFA has shared their programs and assets with other nonprofit organizations that are committed to implement some of the programs that the NFA previously developed and implemented.
Fortunately, even before we experienced the impact of these changes, the NFA had planned to subdivide and receive help implementing certain programs through its Leaders Against Pain (LAP) program. The participants of the LAP training and the members of the Leaders Coalition were going to help administer local advocacy, patient information, FM awareness and media outreach programs. The economic crisis forced us to enact this plan of action ahead of schedule and identify key leaders to help us in this endeavor. Jan Chambers, a LAP graduate and the Director of the NFA Coalition is also the founder and President of a Utah 501 c 3 nonprofit organization, the Center for Understanding, Education, and Research of Fibromyalgia (CURE FM). She was a prime candidate and a passionate supporter of the FM community who came to us volunteering her time and expertise. Recently her group was renamed the National Fibromyalgia and Chronic Pain Association (NFMCPA), which has the capacity to represent the fibromyalgia community through high profile and public-awareness events, as well as to further become involved in research opportunities.
The NFMCPA will also work to ensure that an interest will remain in continuing to investigate FM’s relationship to overlapping conditions, such as irritable bowel syndrome (IBS), migraine headaches, interstitial cystitis (IC), restless legs syndrome (RLS), reflex sympathetic dystrophy syndrome (RSD), chronic pelvic pain, and other comorbid chronic pain disorders. Jan and her organization understand the importance of recognizing the connection of all of these disorders in assuring the best possible treatment outcomes for people with fibromyalgia. She is committed to educating the medical community and the patient community about the importance of recognizing and addressing each of these disorders in treatment regimens. Jan has already jumped into the FM advocacy arena by becoming involved in the national Pain Care Forum Training and Education Subcommittee, and she plans to use her knowledge to continue the development of the NFA Leaders Coalition.
The NFA and FMCPA will also collaborate with the American Pain Foundation, the American Academy of Pain Management, PAINWeek, Allsup and other organizations focused on fibromyalgia and chronic pain. We believe strongly during these difficult financial times that organizations must work in collaboration to meet the needs of our respective communities.
We encourage you to join us in supporting Jan and her team as they continue to grow the NFMCPA and its programs. You can visit www.fmcpaware.org for information on this year’s Awareness Day events and advocacy updates. On this site you will also find a fibro-friendly doctors list, support group information and other resources, including disability news, research highlights and advocacy updates. We look forward to working with the NFMCPA, and sharing our years of experience and network of supporters.
The NFA will be available to support the FM Community and will continue to help improve the quality of life of people with FM. We are currently involved in several important media campaigns, implementing many continuing medical education programs, assisting and encouraging FM scientific research and providing information and educational materials for both the patient and medical communities. We are also dedicated to providing new opportunities for people with FM to participate in surveys and registries that will make an impact on the future direction of research and treatment development.
Even through these difficult times, we continue to provide services to help hundreds of thousands of NFA constituents. Although our normal communication channels were restricted during the past couple of months, we continue to bring our supporters information about our programs through our website, monthly newsletters, e-alerts, patient seminars, continuing medical education curriculums ,Webinars, radio blogs, Facebook and other social media outlets.
We ask for your continued patience and support as we move forward. The NFA, as always, is committed to working on behalf of all of those affected by fibromyalgia and to helping improve their quality of life.
Sincerely,
Lynne Matallana
Founder and President
I am in Love with Love
and Love is in love with me.
My body is in Love with the soul
and the soul is in Love with my body.
I opened my arms to Love
and Love embraced me like a lover.
~Rumi
Is there a better day for a new Things I Love post than Valentine’s Day?
When you hear the word love, you likely think first of romantic love – cupid, roses, sunsets, and the like. And yes, romantic love is a vital part of our existence, but love comes in so many varieties and packages.
Like the love we have for our family. The love for our parents who shelter and challenge us. The love for our siblings who pick on us endlessly but are the first to defend us if someone else tries to. The love for our grandparents, aunts, uncles, and cousins, without whom no holiday would be complete. And the deep, selfless, limitless love for your children.
And then there is the love we have for our friends. What would we do without our friends to confide in, laugh with, cry with, and grow with? Our friends are a direct reflection of our greater selves. With them, we can be who we want to be.
And the love continues:
Love for our communities – church, school, work, support groups, etc.
Love for our culture – music, movies, theatre, books, art, etc.
Love for out pets – those crazy little balls of fur (or not) that never fail to warm our hearts and make us smile.
But the truest and greatest kind of love that I am most happy to celebrate today is love of ourselves.
Image by Bad Music Laine on Flicker
Image by Bad Music Laine on Flicker
Love is more than a feeling, love is a choice.
Choosing to love oneself is the greatest and most inspiring kind of love. It will nourish and sustain you through all of life’s trials and tribulations. It will give you greater strength and security than you will ever find placing that love with someone else. And it will enable you to accept love and to love others with more freedom and abandon. Loving oneself is the greatest gift.
Too often we look to ourselves harshly and with judgement. We place our focus and emphasis on what we feel is lacking or wrong about us. But what if today, we focus solely on the things we love about ourselves? Wouldn’t that be a revelation?
So I am challenging you today – choose love over judgement.
Sit down and make a list of all the things you love about yourself. Truly focus on you, and what makes you so worthy and lovable. I am certain we can all come up with at least 10 things, but don’t limit yourself – write until you feel your list is complete, and then celebrate yourself!
- Buy yourself a flower
- Make yourself a Valentine’s Day card
- Dress up in your favorite outfit
- Cook your favorite meal and savor every bite of it
- Eat chocolate – slowly
- Pamper yourself with something you have always wanted to do
- Make a vision board celebrating YOU
- Browse your favorite store
- Smile and hold eye contact with everyone you see today
- Laugh
- Love
- Love yourself today – you are worthy!
Loving oneself is not selfish or narcissistic, it is healthy. If you love You, then you will be open to give and receive love from the world. Is there a better way to live than that?
All, everything that I understand, I understand only because I love.
~Leo Tolstoy
It’s been one of those weeks.
One of those weeks when all I have wanted to do is shut myself up in my room and lose myself in books, movies, and God willing, some good sleep. It is my (and I am sure most of our) default position to “retreat” and isolate when I am feeling bad. And it is a desire I have given in to many times throughout my illness.
But I have noticed something.
I have noticed that by staying present and showing up for my life and my responsibilities, I am frequently rewarded with beautiful distractions from the symptoms that would otherwise consume me.
This has been an incredibly high pain week for me. In the past my pain would have been the reason for not moving, but I am in yoga school now, and I cannot make the decision to isolate myself without making the decision to miss the instruction I find so deeply rewarding.
Tuesday
So Tuesday morning I dragged my stiff, aching body to an 8AM yoga class. For ninety minutes I moved, stretched, and warmed my body from the inside out, and while still very much present, my pain became more tolerable.
But then the class work began, and for three hours we sat discussing the philosophy of yoga. Several times throughout the day, as my body got stiffer and stiffer, I told myself “Just go home.” But I stayed. I stayed because I knew my misery would not change if I were home alone with it, and I very much wanted to be present for the lessons of the day. So I stayed.
We ended the day with another 90 minute yoga session, and while still experiencing pain, I was better than I had been in the morning – and much better than if I had stayed home all day focusing on my pain.
Wednesday
Wednesday evening we had a support group meeting. I started our local group because I understand the need for community – the need to connect with others who understand how you are feeling. But I was miserable, and did not want to go. Yet at 6:30 I found myself there, surrounded by other members having an equally bad day (week, month). We ate and talked and had a really great time – the very best reward for making the effort and commitment to show up.
Thursday
Thursday was much the same as Tuesday – yoga class all day. In my mind Wednesday evening I was preparing the email I was going to send to my instructor, explaining why I was not in class Thursday morning, and yet Thursday morning came, and there I found myself – stretching and moving with my fellow classmates.
After our morning practice, we sat in a circle and did what my teacher calls “checking in.” Each student takes a minute to share where they are and how they are feeling about their practice. I sat and listened as student after student shared what drives them and motivates them in their practice – what inspires them to keep showing up. Again, I was deeply humbled by the universal nature of suffering.
From divorce and custody issues, to the death of a parent, to abuse and addiction, to just generally being lost about the purpose of life – there was a lot of pain being worked out and worked through in that room. After everyone had shared we sat silently, absorbing the beauty of the moment, and then my teacher asked, “How many of you feel better just by being here today?” Every hand in the room went up.
Community
On FibroHaven’s Facebook page I wrote this: There is nothing I can do alone that isn’t infinitely improved with the support of community. I founded FibroHaven on this belief: Community is everything. I directly attribute my growth and healing to the strength I gain by surrounding myself and connecting with those in the communities I have chosen to be a part of. Most people in my yoga community do not know I live with fibromyalgia. It is not important that they do know. I have my support group for that. What is important is that I have found (or created) communities that nourish and sustain me, and most importantly communities that inspire me to keep showing up.
What motivates and nourishes you?
What do you love? Where do you find community? It doesn’t have to be through yoga. And some people even shy away from support groups. But each of us has something that we love and that inspires us. Is it reading and discussing books? Check out your library for a local book club. Is it knitting? What a great way to spend some time, knitting and sharing patterns and design ideas with like-minded people. Do you love your church? Maybe there is a committee you can volunteer for. Or if you are interested in volunteer work, find a cause you are passionate about and volunteer for them.
There are days when yes, it is best to honor your body and rest. But I think we have all experienced the days when somehow we managed to show up to a scheduled event, and were rewarded for doing so with laughter and a lighter heart. You walk into a room and see a familiar smile, and your face feels lighter. You hear a familiar laugh and your heart warms. We need community, even if only for a much needed and welcomed distraction from the reality of living with chronic illness.
Friday
Today is Friday, and my pain is better. Showing up this week did not make me worse or increase my pain. Showing up this week nourished me, and encouraged me to keep showing up. That is what community does.
A good friend of mine asked me recently, “What do you eat?”
Since going gluten-free over a year ago, and vegetarian for the past several months, it is a question I am asked frequently. And truthfully, it is a hard question for me to answer. Not because I have not been cooking and eating some pretty amazing food, but because I am a complete free spirit in the kitchen, and I seldom make the same thing twice.
For years my husband has urged me to write my recipes down, but it is really hard to write down what totally happens on the fly and is never measured. I have decided to make a concerted effort to start sharing some of my favorite recipes here, not only because it will help me to answer the “What do you eat?” question, but also because I will actually be able to come back and read them when I need inspiration or want to recreate the dish. Such a novel concept!
Before I share the simple and delicious Quinoa Tacos I made this evening, I want to emphasize once again how much I have benefited from a gluten-free diet. The daily aches and pains in my hands have completely disappeared. The awful head and neck aches I never associated with food are much improved. My brain fog and fatigue are also reduced and some days nonexistent. Within 3 days of eliminating gluten from my diet I knew it was a lifestyle choice I needed to commit to for my health. I continue to reap the benefits of eliminating this inflammatory protein from my diet.
Being gluten-free is a challenge in itself, but eliminating meat from my diet has really tested my culinary creativity! And that is how we arrived at Quinoa Tacos.
Quinoa is grain-like crop and is an excellent source of protein. It cooks up just like rice and is a very versatile food. So versatile in fact that tonight it served as a substitute for ground meat in our tacos.
So here I go, my first attempt at documenting a recipe. Follow along as best you can!
Quinoa Tacos
First I cooked one cup of quinoa (2 parts water to 1 part quinoa). Once cooked, I transfered the quinoa to a saute pan heated on medium heat with a small amount of olive oil. I then treated the quinoa just like ground meat and added the following seasonings:
Chili Powder – palmful
Cumin – half to full palmful
Paprika – palmful
Cayenne Pepper – quarter palmful
Garlic Powder – half palmful
Salt – pinch of kosher
Pepper – 10-12 twists of the grinder
Gluten-free Worcheshire Sauce - three shakes
It would be pretty great if I could tell you exactly how much of each wouldn’t it? The above amounts are my best guess, but really, truly, I think all seasoning should be done to taste.
Once seasoned, I cooked the quinoa for 5 minutes, and then I added a can of tomato sauce and cooked for 5 minutes longer. AND IT TURNED OUT AMAZING!
To complete the tacos, I added sauteed onions and red bell peppers, sliced avocados, grated cotija cheese, a dab or greek yogurt, and fresh cilantro. And of course I used corn tortillas. What would we gluten-free foodies do without corn tortillas?
Healthy and incredibly satisfying! So much better than the greasy, heavy tacos I used to make. No food coma here! Now if only I had thought to take a picture…
Next time, I promise…
And if you liked this taco recipe, just wait until I share my mashed potatoes and asparagus tacos recipe!
As much as I love my yoga – and I really love my yoga – nothing centers, soothes, and balances me better than sitting silently in meditation. If I am frustrated, anxious, fatigued, sad, or experiencing any other number of annoying or overwhelming emotions, meditation brings me out of my funk and helps me look at my life through a clearer lens. It clears my brain, lightens my mood, and prepares me to be an active participant in my life again.
So you think I may be exaggerating just a little?
You have tried meditation and it is just not for you. You can’t quiet your mind long enough to feel any of the benefits I am talking about. I have heard many reasons for not meditating, and I understand if my personal experience is not quite enough to sway you to try meditation. Hopefully this recent study on mindfulness meditation will help you to see the value in starting your own regular meditation practice.
(PhysOrg.com) — Participating in an 8-week mindfulness meditation program appears to make measurable changes in brain regions associated with memory, sense of self, empathy and stress.
“Although the practice of meditation is associated with a sense of peacefulness and physical relaxation, practitioners have long claimed that meditation also provides cognitive and psychological benefits that persist throughout the day,” says Sara Lazar, PhD, of the MGH Psychiatric Neuroimaging Research Program, the study’s senior author. “This study demonstrates that changes in brain structure may underlie some of these reported improvements and that people are not just feeling better because they are spending time relaxing.”
“It is fascinating to see the brain’s plasticity and that, by practicing meditation, we can play an active role in changing the brain and can increase our well-being and quality of life.” says Britta Hölzel, PhD, first author of the paper and a research fellow at MGH and Giessen University in Germany.
The uplifted feeling I get after sitting in meditation is not just because I took a few moments to sit quietly and relax, it is because my brain is being reconstructed. The participants in this 8 week study reported meditating for an average of 27 minutes a day. Analysis of MR images, which focused on areas where meditation-associated differences were seen in earlier studies, found increased grey-matter density in the hippocampus, known to be important for learning and memory, and in structures associated with self-awareness, compassion and introspection.
Meditation actually changes our brain structure.
I have tried several different styles of meditation, and the type of meditation I chose on any given day really depends on how active my mind is. There are some schools that believe there is only one way to meditate properly. I am not enrolled in any of those schools.
If you read Eat, Pray, Love and are unexperienced in meditation, you may think the meditation described in the book is the only way to practice – sitting for hours in pain, judging yourself harshly until your mind cooperates and quiets down, taking four months in an ashram to finally achieve a good meditation practice. It does not have to be that difficult.
Many of us have participated in the Chopra Center 21 Day Meditation Challenge.
It is a great and gentle introduction into different types of meditation, and in fact the Winter 21 Day Challenge began today. It is not too late to sign up if you are interested. The meditations last an average of 15 minutes each. They are guided by The Chopra Center’s lead educator Davidji. His voice is soothing and seductive as he guides participants through a different meditation technique each day. I highly recommend this challenge if you are considering starting your own meditation practice and would like to be eased into it.
For another simple, yet powerful breathing meditation practice, Thich Nhat Hanh’s Conscious Breathing Practice never fails to center me.
From Peace is Every Step, by Thich Nhat Hanh
“There are a number of breathing techniques you can use to make life vivid and more enjoyable. The first exercise is very simple. As you breathe in, you say to yourself, “Breathing in, I know that I am breathing in.” And as you breathe out, say, “Breathing out, I know that I am breathing out.” Just that. You recognize your in-breath as an in-breath and your out-breath as an out-breath. You don’t even need to recite the whole sentence; you can use just two words: “In” and “Out.” This technique can help you keep your mind on your breath. As you practice, your breath will become peaceful and gentle, and your mind and body will also become peaceful and gentle. This is not a difficult exercise. In just a few minutes you can realize the fruit of meditation.”
So tonight, after I finish writing and editing this post, I am going to roll out my mat, light some incense, and sit silently in meditation. And in doing so I will let go of the frustrations of my day, and prepare myself to sleep a peaceful, restorative sleep. The ten, twenty, or thirty minutes I dedicate to my meditation practice will continue to serve me for hours after. That’s a pretty good trade off of time don’t you think?